Spina Bifida Awareness Week: Spina bifida occulta and tethered spinal cords

Katherine Pearce, Managing Associate in our Medical Negligence team, has many years of experience supporting families whose lives have been affected by a form of Spina Bifida known as spina bifida occulta, or ‘tethered spinal cord’.

Today marks the start of 2022’s Spina Bifida Awareness Week, and our charity partner Shine is bringing the “Back to the Front”, by telling people about living life with Spina Bifida and raising money for those who are affected.

WHAT IS A SPINA BIFIDA OCCULTA?

It is the most common form of spina bifida, where one or more of the vertebrae do not form correctly. In most cases this does not cause a problem but in some people, the spinal cord is attached to the tissue around the spine and cannot move freely.

A tethered spinal cord mostly affects children because the tethering occurs during development in the womb. It can result from other causes too, such a spinal surgery or spinal trauma, but here we’ll focus on tethered spinal cords in children.

Problems can arise from a tethered cord as a child grows because the nerves that control parts of the body (usually the legs, bladder and bowel) are attached to tissue and become stretched. As the body grows the nerves stretch, the blood supply is reduced and damage can be caused to the part of the body that the nerves go to.

So for example, if the cord is tethered at the point where the nerves go off to the bladder, the pulling and stretching on those nerves can cause incontinence, urinary retention or bladder spasms. If the nerves going to the legs are affected, it can cause pain and weakness in the legs. The longer the problem goes on for, the worse the damage can be.

TETHERED SPINAL CORDS AND MEDICAL NEGLIGENCE

In many of our cases babies born with spina bifida are born with marks on the base of their spine. These can sometimes look like a hole (a dimple) or like raised red marks otherwise called  ‘strawberry marks’ or a haemangioma.

In the cases I have been involved with , the marks are spotted by doctors who did not investigate them further . If further investigations are done at that stage including an ultrasound scan or an MRI scan these examinations can show where a spinal cord is  tethered and as a result affected babies will be regularly reviewed by neurosurgeons and urologists. When any problems start to show as they grow, they will have had surgery to de-tether the cord.

The guidance for doctors says that if a baby or child has a mark (which could be a dimple, a tuft of hair, a fold of skin or a strawberry mark) on the base of their spine – which is known as the sacrum – they should be scanned because there is a risk that it could be spina bifida. If a child is scanned and the cord is tethered, then it is more likely than not that the tethered cord will be identified even at birth.

MISSED OPPORTUNITIES

In four of our recent cases, the marks on the base of two of our clients’ spines were recognised by healthcare professionals at birth or shortly after. In both cases no scan was done, missing the opportunity for diagnosis of a tethered cord.

One of our clients was five years old and the other was eight years old when they started to show symptoms of having a tethered cord – both children started to lose the ability to control their bladder and one started to walk with one foot turning inwards.

They were both referred for a scan but by the time the tethered cord was diagnosed, the damage was already done. They both had extensive spinal surgery to detach the cord from the tissue but they are left with life-long injuries as a result of the stretching of the nerves.

An early diagnosis of a tethered spinal cord is important because it gives surgeons the opportunity to monitor development, to observe any symptoms early on and the chance to de-tether the nerves which can prevent any further deterioration.

WHAT DIFFERENCE WILL A CLAIM MAKE?

A successful clinical negligence claim can only provide financial compensation, but as a firm we work with our clients to help them get answers about what went wrong, and what the future holds for them.

One parent told Katherine that “having more knowledge and a name for some of the diagnoses helps and aids in discussions with our child when they are feeling down.”

The point of making a claim is to enable families to put in place measures to support their child in the long term so their future will be as little affected as possible by the long term effects of their injury. It also means that the individual with spinal bifida can access additional therapies including the support of specialised physiotherapy and other forms of rehabilitation that will help them limit the effects of their injury.

FIGHTING FOR A DIAGNOSIS

If you are worried that you or a loved one could have a tethered spinal cord, it is important to get a diagnosis as soon as possible. Speak to your GP, explain why you think there is a risk and ask for a referral for a scan.

Shine, our charity partner

Shine are a charity which helps people with spina bifida and their families. Their website contains a lot of resources which can help you find out more about spina bifida, and by joining you’ll get access to local and national support groups.

We’ve partnered with Shine so that we can both find more ways to help families affected by spina bifida negligence.

LEGAL EXPERTS IN TETHERED SPINAL CORD CASES

Our team at Enable Law have been able to help hundreds of people who’ve been left with permanent injuries due to problems with their diagnosis or medical treatment. If you or someone in your family has experienced a delayed diagnosis of a tethered spinal cord, do please contact us to find out more about how we can help.